Voices of Impact – Dr. Judy Salerno / Health of Women [HOW] Study

Research, Leadership

By: Judy Salerno, President & CEO

Susan G. Komen

Hello and thanks to all of you for such a warm welcome as I assume my new role as President and CEO of Susan G. Komen. I’ll be posting on our blog frequently, and I hope you’ll come back many times for regular updates.

Although I’ve been at Komen for just a few weeks, I’ve been familiar with Komen’s work for many years in my roles at the Institute of Medicine, the Department of Veterans Affairs and the National Institutes of Health. I thought I knew a lot about this remarkable organization before I joined it. But I’m learning quickly that Komen has a depth and breadth that many people aren’t even aware of.

There’s news here on several fronts, starting with the innovation of several major breast cancer organizations working together on a single research project. There are well over 1,000 breast cancer organizations in the U.S. Many were founded locally to help a local hospital or to honor a family member or friend with breast cancer. The larger organizations, like Komen, YSC, Dr. Love’s foundation and others, were established with specific goals. Some fund just research; others are active only in public policy; others reach out to specific groups of breast cancer survivors. Komen works in all of these areas: research, public policy and community health, and we do this in 30 countries worldwide.

Whatever the specific focus of breast cancer organizations, our primary goals are the same: to end breast cancer and save lives. Ultimately, we seek not just treatments, but scientifically proven prevention strategies. There are many opportunities to advance our mutual goals by working together, and this new collaboration of the Dr. Susan Love Research Foundation, Komen and the Young Survival Coalition is a great start. We hope other breast cancer organizations will join us as well.

We have two priorities in this partnership. We want all people to participate in the Health of Women [HOW] breast cancer study, developed by Dr. Love and Dr. Leslie Bernstein in 2012 as a means of identifying the causes of, and prevention strategies for, breast cancer. The HOW project is precisely the kind of large-scale, long-term study we need to identify patterns common to breast cancer patients – medical history, family history, geographic location, reproductive history, ethnicity or lifestyle, for example. Dr. Love is “democratizing” the research by inviting everyone – male, female, old, young, breast cancer survivor or not – to participate in the HOW study. Even if you are not a breast cancer patient, comparing information about you can help us identify areas which make a person at greater risk for developing breast cancer.

Our second objective is aimed at improving breast cancer treatment by identifying issues that breast cancer survivors are facing today. These include side effects of current treatments such as lymphedema, depression, mobility issues, “chemo brain,” loss of sexual appetite, etc. Almost every breast cancer survivor knows of these side effects, but many don’t talk about them.

I’ve seen this phenomenon myself as a practicing physician. Many patients are made to feel that they should be grateful to be alive, and so they’re reluctant to report other effects of treatments that are saving their lives. For the medical community, there are few places where such side effects are widely documented. This means that healthcare providers themselves may not know how widespread some side effects really are, or which of their patients are likely to experience them.